Addressing the inaccuracies

I had the misfortune of reading an "education article on juvenile arthritis".  Unfortunately, reading this was akin to how I would imagine reading a JA article in the National Enquirer would be.  The educational content was significantly lacking at best, downright ignorant & hurtful to the cause at worst.  As a parent of a child that has had arthritis for several years now, I have seen, read, and had conversations that absolutely floored me, but this one still has me angry a week later.  The link to this misinforming JA article is here.  If not for copywrite laws I would copy & paste it.  Apparently, the "doctor" that wrote the article writes these and leaves them on his blog.  The majority of his writing is riddled with errors; some advice is dangerous in other articles.

What makes me angry is that this man has no medical training as a pediatric rheumatologist, or in rheumatology at all.  He is writing about the same preconceived notions without doing the research that anyone with an opinion could write, but because he has doctor in his title, people are more likely to believe him.  This can be very detrimental when the subject is something like JA.  We fight so hard to raise awareness, trying to let people know that AutoImmune Arthritis is not because the joints are wearing out from use or old age.  AA is an AutoImmune disease; the body is attacking itself!  No one knows why this happens.

The first (intro) paragraph is innocent enough, though they don't call Juvenile Arthritis "Juvenile Rheumatoid Arthritis" anymore.  Studies show that most children do not have a positive Rheumatoid Factor; children that do generally have other issues, such as Mixed Connective Tissue Disease.  I'll let that slide because some old school docs still refer to it as JRA.  (I prefer Juvenile AutoImmune Arthritis, though that is not what the experts call it.  It's easier to say that and have people actually understand as opposed to making comments based on ignorance because they think they understand.)  Perhaps it's because he doesn't know that the Arthritis Foundation has 100+ different disease that fall under the umbrella of arthritis, including Raynaud's Phenomenon, Mixed Connective Tissue Disease, Lupus, Dermatomyositis, Polymyositis, Behçet’s disease, Lyme's Disease, Tendonitis, Wegener's granulomatosis, Scleroderma, etcetera.  These diseases are all different, yet they are all forms of arthritis.  Yes, children can get them all.

From paragraph number two, the first thing that struck me is that every article in the past that I've read said that most children are generally diagnosed around 18 months because that is when the child is walking, and often seems to be struggling to walk.  Symptoms can appear at any time.  I've never read that boys symptoms show after girls.  That could be correct, but I could neither prove nor disprove that one.   I personally don't believe that is true.
"JRA is usually temporary, and only in rare cases does it last a lifetime. Most commonly, it disappears as the child matures. This is due to the strengthening of the child’s immune system and energy over time."  The first thing that I have to laugh about here is this:  AutoImmune disorders are a result of an over-active immune system.    This would be why these children are put on drugs like Methotrexate, Enbrel, Remicade & Humira, which are all immune suppressors.  Some children are lucky enough to have it "disappear", otherwise known as remission.  They are not "cured".  Many of the children that had JA when I was growing up are the same people that now suffer in silence, told that they can't be sick because we can't see it.  How many people do you know of that had Lupus just go away?

This doctor admits that we don't know what causes JA, but he believes it's due to an energy imbalance caused by the spleen & liver.  Hmmm, some systemic cases may have those organs involved, but most people that I know do not have any organ involvement.  He goes on to say that the weather on the day of conception plays a part, as does the energy of the parents on that day.  So, if you're having a bad day and it's raining out when you're child is conceived you are much more likely to have a child with arthritis?  Somehow, I think not.   He seems to place a lot of blame on the parents.  I can honestly say that I did everything right during my pregnancy with my JA child.  I didn't drink or do drugs (and still don't, thank you!).  I quit smoking, I ate right, got enough sleep, babied myself to a degree, tried to stay away from any stressful situations.  I did everything right.  So, this is my fault?  If any of my children should have gotten JA then, it would have been my oldest.  My doctors advised me to keep smoking since I had a lot of stress, I didn't do any drugs or drink with her either, but I was pretty stupid about nutrition.  I certainly could have done better.  And she's perfect.  Go figure. 

He believes that better nutrition would benefit.  Though that makes a lot of sense, there are no studies that prove that diet has a hand in any of this.  There are specific foods that help reduce inflammation, and others that can cause it (like the nightshade plants- no peppers or potatoes, if I remember correctly).  In the beginning I did a ton of research on this, hoping that I could maybe make it disappear through better diet.  Aside from that info, the best that I could come up with is that many people with AutoImmune Arthritis also have other AI diseases that affect their digestive system.  Many are gluten sensitive and feel much better with a gluten-free diet.  Some can't digest sugars properly either, and they feel better cutting sweets out entirely. 

The last thing that I will pick apart for now is that this man claims that positive thinking "also plays a big role in the speedy outgrowing of JRA".  Ok, I do believe that positive thinking does a LOT of good, but I do not believe that you can cure yourself that way.  I also believe in the power of prayer, but that doesn't mean that Jesus Christ is going to come and cure my child just because I ask Him to.  He has a plan, it is perfect, I have no idea what it entails, & so I will not always get my way.  I realize that Oriental medicine is much different than traditional US medicine.  I know nothing about Oriental medicine partially because I have not trained in it and I do not just decide without fact-finding that something should or should not be true.  However,  I believe that if you're going to write an article on a condition that affects any group in the USA, you should do some research on some material written & proven true in the USA.

On a side note, Emily's new wheelchair came in!  We are very happy about this.  I am thrilled that it came in before a myositis flare left her incapable of walking, for one.  Obviously, we are hoping that will never happen, but since the odds are not in our favor we felt like getting a chair in quickly would be for the best.  Currently her endurance and stamina are not good.  She tries very hard, but if we have a lot of walking to do she simply can't do it.  Walking from the car to her doctor's office at the hospital wears her out.  We use the chair to get the the parking garage on one side to her doctor upstairs and at the opposite end.  If we happen to go to the mall (which is very rare, thankfully) she can't handle that.  Partially it's because her legs can't do it, but also because the steroids have puffed her out so badly that she can't get comfortable.  Of course, she went from 42 lbs to 62 lbs in a month.  I think 30% went to her face, 50% went to her belly, and the rest got spread out.  Her belly went from not having an extra ounce to looking like she was due with twins any day.  That does not make it easy to move.  Her feet are having a rough time adjusting, too.  It's a lot of extra weight added very quickly.  Still, she's very blessed.  Many JM kids are still bedridden for months and months.  She was only mostly down for about 2 months;  at her worst she could still drag herself across the house to the bathroom.  Many kids can't.  I shall leave with a new pic of Em in her chair  :)  We had just gotten her out of her bath;  I hadn't had a chance to comb her hair or anything yet.  We were rushing to get her into bed, but I really wanted to get it set up in case we're in a hurry the next time we need it.  The pictures were an afterthought.